I could sit and ponder those hours in the ER for days on end. It's a time before - as in the time before I really knew about what my life would be like later, and how simple my life was before all this happened. After I got out of the ER I was transferred up to this gargantuan room on the 8th floor. I could barely believe my luck. It was huge. My mother and I both thought we were saved by this one doctor who could see how distraught I was by the 26th hour in the ER but actually, I think the more likely reason was because they had not yet ruled out infectious disease and they needed to keep me quarantined for fear of infecting other patients. As soon as they cleared out the possibility of an infectious disease, I was again transferred – to a step-down unit (meaning, one step down from the ICU) on the 5th floor – and was sharing a room with 3 other people.
In that first room on the 8th floor, I was still trying and failing to eat. My outright refusal of food was a real problem through out each room and each stay. Since I was in for such a long while each time, I got to know the orderlies who would bring around the food trays. There was a really angelic woman who would come by everyday, and she really had a vested interest in me eating. I didn’t like the idea of wasting food, which is inevitably what would happen each time I took a tray. So I just started ordering only bananas (always been a banana fan). She’d come in and say: “Only bananas, again? You don’t want anything else?” I’d always refuse, and then my dad would bring me oatmeal (a multi-year, multi-continent love affair - see previous post) or my aunt would bring me food from this place near her house, or the Tonight Show would send me enough food to feed an army. Any visitor I had got a food request through, and my close friends just started bringing food of their own volition, they knew the drill. Through out each hospital stay, I always refused food: on the one hand I felt too sick to eat, and on the other I couldn’t face the cardboard mushroom soup on offer yet again.
My mother, on the other hand, was less discerning and at times totally enamoured by the stuff. I distinctly remember being brought a standard plate of food – which had a burger on it – and not even being able to look at it for fear it would make me vomit. She gladly took it and munched it down and tried to give me a big wet meaty kiss – which I rebuffed like any slightly salty-chained-to-a-hospital-bed daughter would. It was there and then that I realized that being confined to a bed would make for a lot of unwanted advances from every turn, so thank god the first one was from my mum. At the beginning, and after transplant, food refusal really was because I could barely stomach a thing. Eventually I knew the menu so well and had tasted enough of the dishes to know I was better off finding another way to get fed. The food they try to pass off as edible in hospitals is astonishing, and everything has sugar, which we know doesn’t help with healing, because it causes inflammation. And which is described, in an article from SugarScience, the online source for authoritative sugar research University of California San Francisco as actually toxic to the liver, and in some cases more toxic that alcohol. I once counted how many grams of sugar were on a breakfast plate and it added up to 40 grams. That’s just one meal - and they plop this down in front of patients, who are often on opiates (which can cause an increase in sugar cravings and consumption). I’m not diagnosing blame on hospitals, and I know there are initiatives that are working to improve things, and that starts by cooking real food, like this New York Times article talks about.
It certainly isn’t just a hospital problem, it’s a global problem—but we have to try to find a better way for patients. It does them a disservice to think of food as an afterthought in the process of healing. I know from my own experience that I had to look for outside help to heal through nutrition beyond what the standard diet guidelines suggested, and that after chronic use of opiates over the course of two years, my sugar cravings were and still sometimes are off the charts. I don’t know what the solution is - but considering how much money passes through the doors of those institutions, there has to be a better way. For patients, I think the best thing is to order as many of the fruits and vegetables that are available to you, avoid all the sugary drinks that are offered and eat the meat sparingly (or hope that you’re at one of the hospitals that are working to change things). That was my tactic, as well as asking all the people in my life to bring me food and always keeping snacks by my side. But it took me a long time to realize this, and it wasn’t until my third stay that I made sure I had other options. Either way, I was hungry for the better part of two years—and not just as a result of hospital food. That’s just what happens when you’re really, really sick.